Porphyria and Sleep

Porphyria and Sleep
5
(2)

If you have porphyria, you likely may regularly have trouble getting a good night’s sleep. There are ways to help remedy that.

What is porphyria?

Porphyria refers to a group of disorders in which affected individuals cannot make hemoglobin, the protein that binds oxygen in red blood cells. Because of this inability, porphyrins — chemicals the body normally uses to make hemoglobin — accumulate in the body.

Sleep and porphyria

Whether you have cutaneous porphyria or acute porphyria, your sleep is probably regularly disrupted. Usually, it’s pain in your body that rouses you. In acute intermittent porphyria — the common form of acute porphyria — symptoms include chest, leg, or back pain. Some people also have severe abdominal pain.

Even when not experiencing a pain crisis, it may be common for you to have poor sleeping patterns.

The American Porphyria Foundation website features the stories of several people with porphyria and their sleep problems. In one, Steve Stevens, who has variegate porphyria, recounts his long journey to diagnosis. This included an earlier diagnosis of a sleep disorder that he said made him tired all the time.

Advice on sleep

Here are some suggestions that may help improve the quality of your sleep:

  • Since anxiety is a symptom of acute porphyria, meditation could be particularly useful in helping you sleep better. Try using visualization or calming music to help send you off to sleep.
  • Try not to worry before going to sleep. Instead, focus on dealing with things during the day, or make a list of what you need to deal with the next day.
  • Make sure you have a quality mattress, which some say should be changed at least every decade. Test the mattress when shopping so that you get the right one for you.
  • Lower your intake of coffee and caffeinated drinks such as some teas and sodas, especially in the evening. Also, keep alcohol consumption to a minimum.
  • Exercise more as working out enhances deep sleep. Light activity early evening is best.
  • Eat well. If you have acute porphyria, you’re probably already used to a diet of readily digestible foods to combat daily symptoms like nausea. Some foods also inherently promote good sleep. They include leafy green vegetables, nuts, whole grains, mushrooms, and fruit. Avoid rich foods at bedtime.
  • Keep cool. A bedroom that’s too warm reduces sleep quality.
  • If you can’t sleep, get up, make a hot milky drink, read a book, or listen to relaxing music until you feel sleepy again.

 

Last updated: June 9, 2020

***

Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Total Posts: 0
Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
×
Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Latest Posts
  • doctor visit
  • clinical trials
  • treatment plan

How useful was this post?

Click on a star to rate it!

Average rating 5 / 5. Vote count: 2

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?

One comment

  1. Joni says:

    Thank you for this article on sleep and Porphyria. Throughout my life, I had been a great sleeper but as my symptoms increased and I was having attacks regularly, my sleep began to get compromised and now it one of the biggest hurdles to get over. Sleep is so important, but so difficult with Porphyria. Thanks again for this insight.

Leave a Comment

Your email address will not be published. Required fields are marked *